Please go to www.caringbridge.org/visit/ryanchristian and sign in to follow our journey.
Team Ryan hosted and participated in several events in 2015 to raise money and awareness for pediatric cancer research. We were honored to make significant donations to St Jude Children’s Research Hospital in Memphis, Tennessee , Nationwide Children’s Hospital in Columbus, Ohio and Princess Margaret Hospital in Toronto, Ontario.
The Inaugural Golf Outing held on June 26 at Little Turtle Golf Club was a huge success. With 120 golfers, celebrity appearances, great prizes from our sponsors and perfect conditions everyone who participated had a great day. Team Ryan raised $23,000 for The Research Institute of Nationwide Children’s Hospital.
Team Ryan participated in the event Road Hockey to Conqueror Cancer in Toronto to raise funds for The Princess Margaret Hospital. We raised over $17,000 CDN for cancer research.
Once again this year Team Ryan partnered with the Columbus Blue Jackets and the Blue Jackets Foundation to sell 50/50 Raffle tickets. Always a fun evening, the total amount was over $11,500 with half going to the 50/50 winner and half to pediatric cancer research.
It was a great year for Team Ryan and we are excited to continue to honor our beloved Ryan and raise funding for pediatric cancer research. If you have any fundraising ideas or want to get involved with Team Ryan, please contact us through this website.
We appreciate our family, friends, corporate partners and everyone who supports Team Ryan. Happy New Year and Go Team Go.
It’s November 1st!!! We are SO excited, because this means it is time for St. Jude Thanks and Giving! Our family has so much to give thanks for, including the 3 extra years we had with Ryan thanks to the fine work of St. Jude. Could you walk a mile for pediatric cancer? Team Ryan Charitable Foundation for Pediatric Cancer Research has established teams in Columbus, Cleveland, Kansas City, Tulsa, Chicago, Detroit, Charlotte, Orlando and Houston. There are 65 walks nationwide, taking place on the morning of November 22. If we do not currently have a team set up in your city, let us know, and we will set one up. There is absolutely no fundraising requirement to join us! Just sign up, select “Join a Team”, and enter Team Ryan Charitable Foundation as the team you would like to join. You will be provided a personal fundraising page when you register. Feel free to borrow pictures from our website and share our story. There is no requirement to raise funds at all, but if you raise $35, you will receive a St. Jude Give Thanks Walk t-shirt. If you raise $50, we will send you a Team Ryan t-shirt. Just send us your size once you meet your goal. Register HERE.
Pediatric Cancer Awareness Month, Day 30:
I have been dreading writing “Day 30” since I started providing these updates. On January 23, 2013, we had celebrated Christmas and Ryan’s birthday, and crammed as much fun as possible into a very short time. Ryan was growing weary and tired, sleeping most of the day. That night, with her star machine (a nice gift from a friend) displaying stars across her bedroom ceiling, Jeff cuddled her. She said, “Dad, my character died.” It was such an odd statement at the time, but it all makes perfect sense now. The day before, Ryan hugged and cuddled with her Aunt Vicki (our family friend) as if it was the last time she would see her. That very night, she had hugged and cuddled her Grandma. Now she was preparing us and saying goodbye in her own way. She was so self-aware, and always cared deeply about the feelings of others. In Kindergarten, she was given the award for compassion. Now she was showing it to us, even in her most difficult and painful time.
On the morning of January 24, 2013, Ryan got up and actually walked to the kitchen table to color. She was happy and active, although she was breathing hard and coughing quite a bit. We colored through lunch time, then she went to her room to rest. She was breathing very hard, and experiencing quite a bit of pain, so Jeff went to the pharmacy to pick up a new inhaler to help her. Before he could return, her pain became acute. I called him and told him to hurry home. In the back of my mind, I knew we did not have much time remaining. St. Jude advised us that when Ryan passed, her lungs would either fill with carbon dioxide, and she would slowly fall to sleep, or a piece of the tumor would break off and there would be a sudden event. Neither sounded like a good option to us, so we tried not to think about it. In the end, it appears Ryan suffered a sudden event. We raced her to Nationwide Children’s Hospital, and Jeff carried her in, blood dripping from her little mouth. I pleaded with the ER doctors and nurses to give her morphine… anything to relieve her pain. In these last moments, all we could do was ask that she not suffer. She had been through so very much. All we could do now was lessen her pain. Weeks before, we made the decision to execute a DNR. We saw no benefit in extreme measures being taken to extend her pain and suffering. She was provided morphine to make her comfortable, we told her how much we loved her, hoping she could hear us, and within a matter of moments, we watched her heart monitor flat line. She was gone…
Doctors and nurses who treated Ryan in the short time she was at Nationwide Children’s Hospital came to hug us and pay respects. The ER staff was crying. If you ever think doctors have no feelings, please think again. Everyone involved was heartbroken. We spent a good hour with Ryan after she passed, holding her hand and telling her we loved her. Mostly, we were dreading walking out of that hospital without our girl. When we did, it felt unnatural and sad. We never left her alone. We stayed with her always. We were now a family of 3.
Because we knew Ryan would not want a funeral, we held a beautiful celebration of life ceremony at The Columbus Zoo and Aquarium. Friends and family made it happen, and the day was perfectly captured in this video: https://www.youtube.com/watch?v=ljuJoXZ6Dfk
Thank you for following our story this month, friends. Your support means the world to us. In the coming months, please watch to see what we are now doing in Ryan’s name, so that no other child suffers Ryan’s fate, and no other family experiences our heartbreak. If you have the means, please consider a tax deductible donation to the Team Ryan Charitable Foundation for Pediatric Cancer Research. Pediatric cancer is not pretty. Awareness and funding are crucial.
Pediatric Cancer Awareness Month Day Twenty-nine:
In November 2012, we were becoming convinced that the experimental chemo drug Ryan was receiving was, in fact, working. Ryan seemed to have more energy, she was losing a bit of weight, and her hormonal side-effects lessened. We were planning to travel to St. Jude in just 2 days to confirm our positive thoughts with scans. Then Ryan came down with a cold. It was not a little cold, though. She was coughing and wheezing and gasping for air at times. I spent an entire night sleeping on the floor of her bedroom next to her, trying to comfort her. Early the next morning, Jeff took her to the Kansas City Children’s Mercy ER, where we learned that Ryan’s lung had collapsed. Children’s Mercy consulted with St. Jude, and scans were conducted in Kansas City rather than Memphis. We will never forget being called into a small consultation room, on a conference call with Dr. Federico, from St. Jude. We were back in the place where Ryan was initially diagnosed, and three years later, we were being told there was nothing left to do. Ryan’s lungs were filled with tumors. This is what caused her lung to collapse. The new treatment was not working at all. Ryan’s tumors were growing at an alarming rate, and no one was sure how much time she had remaining.
There was nothing Ryan wanted more than to be at her Grandma Ohio’s house in Columbus, Ohio, so we were determined to make this happen. St. Jude arranged a medical ambulance to transport her. Ryan said goodbye to all of her friends in Kansas City and was transported to Nationwide Children’s Hospital in Columbus. She would be in and out of the hospital on hospice care, but we tried to make her last moments the best they could be. We celebrated Christmas, went to a Carrie Underwood concert (with backstage passes so Ryan could meet Carrie), visited the animals with Jack Hannah at a behind the scenes tour at the Columbus zoo, and celebrated Ryan’s 11th birthday.
Thank you, friends, to those who have donated and shared our story this month. Parents should not be forced to discuss, let alone prepare their child for death at the age of 11. How do you look a child in the eye – a child who has done everything asked of her and endured every painful treatment possible – and tell her there is nothing left to do? Her long, hard battle would not result in the victory she most definitely deserved. For Ryan, life was tragically unfair.
If you have the means, please consider a tax deductible donation to the Team Ryan Charitable Foundation for Pediatric Cancer Research.
Pediatric Cancer Awareness Month Day Twenty-eight:
Having vowed to live in the moment, we tried our best not to worry about what the future may hold. Ryan started 5th grade at William Bryant Elementary, in Ms. Oddo’s class. The school was so fabulous with her. We are pretty sure she went from room to room, taking part in only the activities she enjoyed. Mostly, we believe she took art about 5 times a day. Honestly, who cares??? We were no longer worried about her grades or whether she was classified as “gifted and talented”. We only hoped that she would live. She was so happy and eager to go to school, because she felt so loved there, and we will forever be grateful for that soft place she had to fall.
At this point in treatment, there was nothing left to even try. Jeff was asked to play in a fantasy baseball camp in Kansas City during the Major League Baseball All-star game. It was sponsored by Stand Up 2 Cancer, and he was asked to play because he had a family member with cancer. Other members of the team included cancer researchers and doctors. During a down moment, Jeff told a cancer researcher about Ryan’s current condition. He asked if actual pieces of her tumor had been tested for genetic mutations, as this was the cutting edge of research and treatment, which he was currently studying. We talked with our physicians at St. Jude, and within days, a piece of Ryan’s tumor was on its way to Boston to be analyzed. Dr. Federico called me one evening to relay the most exciting news we had heard in a while. Ryan’s tumor had a mutation which normally did not appear in adrenal cortical carcinoma tumors. This was a mutation shared with some forms of adult cancers, and there were treatments for those cancers available. What did we have to lose? Our Ryan became a human guinea pig, and began her last and final treatment protocol, geared at treating tumors with like genetic mutations.
Right before we left for treatment, we had some pictures taken of Ryan and Tyler together. Ryan objected, due to her size and appearance, but to this day, the picture below is precious to me. The second picture is of Ryan receiving her first round of this new chemo. At St. Jude Children’s Research Hospital, quality of life is a priority. Ryan was permitted to remain in Kansas City all week, and fly in and out just one day each week to receive her infusion. This allowed her to remain in school, and allowed for family times like the Labor Day photo on a pontoon boat, also shown below.
Please place yourselves in our shoes, friends, as Ryan very easily could be your child. In the Fall of 2012, we were nearly 3 years into our battle against cancer. Imagine looking at your child and wondering if this last chance at life was working. There were many sleepless nights. It was heart-wrenching. If you have the means to help benefit pediatric cancer research, please consider a tax deductible donation. Please also give us a “like” on our Facebook page, Team Ryan Charitable Foundation for Pediatric Cancer Research. Thank you, friends.
Pediatric Cancer Awareness Month Day Twenty-seven:
The summer of 2012 was beyond difficult for Ryan and our family. Ryan endured 3 surgeries to remove tumors from her lungs. The surgeries left her back scarred, but failed to dampen her spirit. Ryan went along with every new treatment, always believing she would be cured. She enjoyed being a big sister to Tyler, offering to feed and hold Tyler all of the time. It did not take long to learn that the clinical trial we hoped would help Ryan was doing nothing to slow her tumor growth. Her weight ballooned due to the tumor growth on her liver, and the high doses of steroids she was receiving. Adrenal Cortical Carcinoma is a tumor with hormonal side-effects. When the tumors grow, they emit hormones that cause acne, odd hair growth and weight gain. Our previously outgoing Ryan became a little more reserved due to the way she looked. To us, she was and forever will be beautiful. Our family spent much of the summer of 2012 in Memphis, in and out of the hospital. The tumor on Ryan’s liver was isolated and ablated, but she suffered pancreatitis as a result, leaving her in the ICU of St. Jude for 3 days. While we were there, a 15 year old boy passed away. I will never forget the face of his mother as I passed her in the hallway, and I could not help but wonder if this would be me in the near future. We had Ryan with us in the moment. We vowed to live in those moments.
Thank you for continuing to bear with us through this pediatric cancer awareness month. Through telling Ryan’s story, we hope to raise awareness and funds to combat pediatric cancer in the future. Ryan’s life must have a purpose. If you have the means, please consider a tax deductible donation to the Team Ryan Charitable Foundation for Pediatric Cancer Research.
Pediatric Cancer Awareness Month Day 26:
Ryan turned 10 years old on January 7, 2012. Her tumors continued to grow, and two types of experimental chemo did nothing to slow them. We waited patiently for a space to open in a clinical trial that showed promise for Ryan’s type of cancer. It was a drug that was studied for adult cancers, but incidentally had positive effects in the lab on ACC tumors. We were grasping at straws and hoping that something, anything, would at least slow tumor growth. The only way to truly remove ACC tumors is surgery, but in Ryan’s case, they always returned. In order to prepare Ryan for this clinical trial, she had surgery on both of her lungs, 10 days apart, to clean out all tumors. We left only a small tumor on her liver, as she needed some tumor in order to be considered for the trial. This was very major surgery, but Ryan handled it like a rock star, as always.
Our lives became about giving Ryan everything she wanted. Since we could remember, Ryan begged for a sibling. We had always argued that our busy lives did not permit a second child, and with Ryan’s illness, we felt that all of our time should be devoted to her. Ryan’s requests became more persistent in 2011, however. She insisted that she needed a baby sister. When Jeff and I learned in November, 2011, that we would have a baby girl, Ryan was so excited. She came to every ultrasound with us, and she proudly wore her “I’m the big sister” shirt in the waiting room as my C-section was performed. Tyler Rachel Christian joined us on March 15, 2012 – 10 years after her big sister. The smile on Ryan’s face said it all. Jeff and I thank Ryan every day for begging for her little sister, as Tyler is the shining light that keeps us going each day. She is, to this day, the greatest gift Ryan left us. Her legacy lives on in this little person who has her eyes and spunky personality. Tyler knows her “sissy” through pictures, and talks about when she will “come home”. One day we will be able to explain everything to her, but for now, we tell Tyler that her sissy loved her and wanted her very much.
Our Ryan could easily be your child. Pediatric cancer can afflict any family, in the blink of an eye. If you have the means, please consider a donation to the Team Ryan Charitable Foundation for Pediatric Cancer Research. Thank you to all who have donated and shared our story.
Pediatric Cancer Awareness Month Day Twenty-five:
In the Fall of 2011, Ryan was given the gift of a lifetime by St. Jude. Actually, she was asked to be featured by St. Jude Children’s Research Hospital on NBC’s the Today show as part of their Thanks and Giving Campaign. While Ryan may have helped St. Jude, our family benefited from two amazing trips to New York City. Ryan’s recorded segment was filmed in October, then we returned in November for Thanksgiving on the set of the show. She was surprised by a visit to the American Girl store and a super secret guest – Scott Hamilton! Ryan actually met Scott during her treatment when we she was the guest of Sheryl Crow at her Memphis concert. Scott and Sheryl were touring Target House, and Jeff and Ryan bumped into them. Ryan was able to skate at Rockefeller Center with Scott Hamilton – a little figure skater’s dream come true! We enjoyed the Macy’s Day parade and all that New York had to offer. We are so grateful for these experiences. Through this entire time, we continued to try new oral treatments for Ryan’s cancer. Nothing worked, and the tumors continued to grow.
Thank you so much to those who have donated and spread awareness for our cause. If you have the means, please consider a tax deductible donation. Thanks friends!
Pediatric Cancer Awareness Month Day Twenty-four:
A scan one month after discovery of the 2 millimeter spot on Ryan’s lung showed the spot had grown, and now there were others. We checked back in at St. Jude Children’s Research Hospital early in the summer of 2011, and surgeons biopsied the lung. This was a rather involved procedure, as Ryan had a chest tube following surgery, and she remained at the hospital for a week for follow-up care. We hoped against hope, but our worst fears were realized when the biopsy returned positive. Ryan’s cancer had officially returned, and we were in a race against time. Seemingly overnight our priorities shifted. Providing Ryan any and every experience she wanted became our number one goal. We traveled to Phoenix, where Jeff was presented the Perseverance Award by the Central Hockey League. We traveled to Maryland for the beautiful wedding of our friends, Andrew and Courtney Lackner. We traveled to Michigan, for a fun vacation with cousins at the lake. We traveled to Montana, so that Ryan could ride horses and visit Yellowstone. Most importantly, we asked Ryan where she would like to live, as we were currently staying in a team apartment in Evansville, Indiana, between travels. It took Ryan no time at all to decide that she wanted to return to Blue Springs, Missouri, where our long journey started. We packed our belongings, purchased a home in Ryan’s old school district, and made our move to Missouri. Ryan returned to William Bryant Elementary with a huge smile on her face. She had sleepovers with friends, rejoined her soccer team, and started figure skating again. Ryan looked healthier than she had in more than a year. The sad truth, however, was that the tumors in her lungs continued to grow at an alarming rate. Children with cancer are not always bald. Our time was running out quickly. We needed a cure.
Thank you to all who have donated to the Team Ryan Charitable Foundation for Pediatric Cancer Research and spread awareness through sharing our story.
Pediatric Cancer Awareness Month Day Twenty-three:
On May 9, 2011, our family traveled to Walt Disney World courtesy of Make-A-Wish Ohio, Kentucky and Indiana. It was Ryan’s dream come true. We stayed at Give Kids The World, which is an entire village created for wish children. The village itself was amazing, but in addition, we were provided with passes to all of the Orlando resorts, with a special “front of the line” pass for all rides and character attractions. Make-A-Wish ensured that Ryan traveled to and from the airport in a stretch limo, in true princess style. Ryan was still a little weak, but she really pushed herself and enjoyed every moment. Her favorite was the makeover she received at the Bippity Boppity Boutique. They attached extensions to her hair and made her a real life princess! Each child who visits the village creates a star to hang inside the Star Tower. It will remain there forever. We hope to visit Ryan’s star, pictured below, on a return visit to Orlando one day. Our family visited 7 parks in 5 days, returning home tired, but oh so happy, with memories for a lifetime.
The week following our dream-like Disney trip, we returned to Memphis for Ryan’s 9 month scans. There is no anxiety quite like scanxiety. Every St. Jude parent knows the feeling. Aside from the the false alarm involving Ryan’s leg, we had always received good news. This time, that would not be the case. A 2 millimeter spot appeared in Ryan’s lung. It was the size of a pinpoint, but chances were, it was cancer. It was not even large enough to biopsy yet, and there was a slim chance that it was not cancer, so we chose the wait and see approach, hoping that the spot would disappear and not grow. We would return in one month for a follow-up scan to monitor growth. In the mean time, we agreed that we would create the best possible 2011 summer for Ryan, because it may be the last good moments she had.
Thanks again to all who have made a donation. We are a 501(c)(3) organization, so if you are looking for a charity to donate to at the end of this tax year, please keep us in mind. We also really appreciate those who have shared our story, as spreading awareness is so important. We would also appreciate a “like” on our Facebook page – Team Ryan Charitable Foundation for Pediatric Cancer Research. Thank you, friends!
Pediatric Cancer Awareness Month Day Twenty-two:
On January 7, 2011, against all odds, Ryan celebrated her 9th birthday. She received more presents than ever! Our greatest gift was her life. 5 months after treatment, Ryan’s scans continued to reveal no evidence of disease. She remained on an intense oral chemo drug called mitotane in an attempt to prevent new tumor growth. Mitotane contains ingredients used in pesticides, but we gave between 2-4 pills to Ryan 4 times daily. Parents with healthy children would be mortified by the chemicals Ryan ingested, but to us, it was all in the name of a cure. The picture of Ryan at the bottom of the stairs, with arms outstretched, shows our celebration of Ryan’s very last cancer free scans. Victory!
We have been so touched by the recent story of Devon Still, and the generosity and compassion the Cincinnati Bengals showed in keeping him on their practice squad in order to assist him with the insurance needed to treat his young daughter’s neuroblastoma. We wish our experiences were the same, but sports are a business. Just months after being told that Jeff was not welcome to play on a league minimum contract in Missouri, so that our family could have insurance, we suffered a similar fate in Mississippi. Jeff’s former coach was terminated as head coach, and the first order of business of the new coach was to waive Jeff – via text message. Ryan’s condition was tenuous, at best, and we longed to remain in Mississippi for follow-up care at St. Jude. Staying in Mississippi meant no health insurance or housing for our family, however, and we could not make it work. I was taking on freelance legal work as it was. We were therefore overjoyed when the expansion Evansville Icemen claimed Jeff off of waivers and brought him in for the conclusion of the season and his career. It meant another move, and I would assist Ryan with online school for the remainder of 3rd grade, but it was an appropriate finish to Jeff’s career, and the community embraced our family from the start. A 9 year old Ryan enjoyed her hamster, Emily, her Disney Channel, and of course, her arts and crafts. She felt better and better as each day passed, but terrible news was just around the corner.
Thank you, friends, for your support of our cause this month. Your donations are greatly appreciated. We also appreciate all who have shared our story, because only through awareness will pediatric cancer receive the funding it deserves. If you have the means, please consider a donation. Please also give us a “like” on our facebook page, Team Ryan Charitable Foundation for Pediatric Cancer Research.
Pediatric Cancer Awareness Month Day Twenty-one:
Ryan took full advantage of her freedom. Yes, she still took approximately 20 pills each day, and we still connected her to IV fluids each night, but the most intense 8 rounds of chemo were over. Her hair started to grow back, and she met new friends outside of the hospital. Of course, she enjoyed returning to St. Jude for her follow-up visits each week as well. St. Jude has one of the most extravagant Halloween celebrations you could imagine. Each clinic chooses a theme. In 2010, Ryan’s solid tumor clinic did “Toy Story”. To go along with the theme, Ryan dressed as Jessie the Cowgirl. Ryan is pictured below with her St. Jude friend, Markell (dressed as Michael Jackson). For those who have not already done so, I encourage you to watch the story about Markell. Our first few months were not without scares. The first month of scans revealed no evidence of disease, but the second scan revealed a mass in Ryan’s leg. While chances were slim that the cancer could have spread to the leg, doctor’s nonetheless performed a biopsy. The biopsy returned negative for cancer, but left Ryan on crutches for 6-8 weeks. As parents, it also left us shaken, with the rude reality that Ryan’s “cancer-free” status could end in the blink of an eye. We definitely felt as though we had dodged a bullet. December 2010 also marked the first year of “Team Ryan”. During all of those months in the hospital, I calmed my fears by running. The ultimate goal became 26.2 miles in December, and I invited all of my friends to join me. Pictured below at the finish line is part of 2010 Team Ryan. Ryan herself took part in the 1 mile family walk/run with my mother. That year we donated $13,000 to St. Jude, and each of the 5 years since, we have continued to increase our donation. It feels absolutely amazing to give back to the hospital that gave us so much. Although we could not truly do anything to fight Ryan’s battle for her, we could run and raise funds in her name.
If you have the means, my friends, please consider a tax deductible donation to the Team Ryan Charitable Foundation for Pediatric Cancer Research. Any amount will help, and all funds raised during this pediatric cancer awareness month are for the benefit of St. Jude Children’s Research Hospital. We cannot express enough gratitude to those who have already donated and/or shared our story. Awareness is the key. Perhaps if others can see even a glimpse of their children in Ryan, they will be motivated to make a difference. Thank you, friends!
Pediatric Cancer Awareness Month Day Twenty:
8 rounds of chemo completed, Ryan was begging us to return to school. It was September 2010, and our plans were so uncertain. Jeff previously played for the Missouri Mavericks, and we had a house full of possessions waiting for us in Blue Springs. There was nothing we wanted more than to return to Blue Springs/Independence, Missouri. The community held an amazing fundraiser to benefit our family, and we knew that they would embrace our return. That said, the hockey team did not offer Jeff a contract. We had a child with an uncertain medical condition, to say the least, and we knew that treatment would continue to run in the millions. St. Jude would cover medical costs and travel for Ryan, but our family was basically uninsurable due to Ryan’s cancer. Jeff was offered a position as an assistant coach with the Mavericks, with a salary that would cover only our rent and the cost of insurance for Jeff and me. Jeff asked to play for league minimum, so that our family could be covered by health insurance, and our utilities could be paid, but the request was denied. Thankfully, Jeff’s former coach from Youngstown was now the head coach in Southaven, Mississippi, just 10 miles from St. Jude. He took Jeff golfing, they talked, and by the end of the day, Jeff agreed to be a Riverking. Our family was provided housing, insurance, utilities, and best of all, we were 10 miles from St. Jude. Ryan could receive all of her follow-up care at the hospital where she received her treatment. It was an absolute dream come true for our family, although it meant another move. A bald-headed, thin Ryan, dressed carefully for her first day of third grade. She wore her favorite Hello Kitty shirt, carried her Hello Kitty lunch bag, and wore her white sequined hat to accent her attire. Below is a picture of Ryan’s first day of third grade. We worried about her so much. She took medicine throughout the day, and she was still on an oral chemo called mitotane, which made her nauseous. Thankfully, she had a sweet special education teacher (Allyson Crouthers) to help her through her days. She had a rough go of things. Previously gifted and talented, Ryan was now a special education student with an IEP. The frustration was often overwhelming. But… Ryan was cancer-free, she was on the mend, and we did our best to settle into a “normal” life.
We would like to thank all of you who have donated very much, from the bottom of our hearts. It means the world to us. Thank you, also, to those who have shared the story of Ryan. We hope to do something amazingly positive in Ryan’s name. If you have the means, please consider a donation. Please also take the time to like our facebook page – Team Ryan Charitable Foundation for Pediatric Cancer Research. Thank you, friends!
Pediatric Cancer Awareness Month Day Nineteen:
After 8 rounds of chemo, weeks in the hospital, more medicine than we can remember, and watching our little girl waste away to half of her former self, we reached the end of treatment. In true St. Jude fashion, we celebrated with a “no mo’ chemo” party and send-off. Doctors and nurses sang a song, threw confetti and gave Ryan balloons. Jeff, of course, brought the cake. We arrived at St. Jude in March, and Ryan completed treatment in September. Final scans showed NO evidence of disease! Ryan’s perseverance rewarded her with the best possible outcome. She would remain on oral chemo in an attempt to prevent relapse, but the hardest treatment was over. This also commenced our nervous waiting game, as we were well aware that Ryan’s type of cancer would almost certainly return.
Thank you, friends, for your support of our cause. If you have the means, please consider a donation of any size to the Team Ryan Charitable Foundation for Pediatric Cancer Research. We would also sincerely appreciate you sharing our story. Through Ryan, we hope to raise awareness and fund research. It is most certainly what she would have wanted.
Pediatric Cancer Awareness Month Day Eighteen:
Rounds 5 and 6 were rough, as Ryan became weaker and sometimes very angry at her continued treatment. We tried very hard to keep her spirits up with fun clothes, games, art and movies. Ryan finished second grade at the St. Jude school with the help of her amazingly patient teacher, Miss Michaela. Not many people know that in the basement of St. Jude, there is a school for the patients, with certified teachers and state of the art facilities. The teachers are one of a kind, as many of their pupils never win their battle for life, let alone graduate from school. The children attend for a few hours every day or every other day, as their treatments and counts allow. Ryan’s teacher from Blue Springs, Judy Payne Linke, sent work for Ryan to complete, and by the end of the summer, Ryan was on par with other children her age. This was an amazing accomplishment, given the serious brain damage she suffered at the beginning of our journey. Her brain healed itself, and although she still had some learning difficulty, our bright, artistic lady slowly returned to us. One of my favorite memories was being discharged from treatment just hours before 4th of July fireworks (the last picture). We jumped in the car and drove to a parking lot, sat in the back of the SUV, and watched the fireworks light up the sky. We were through round 6, and scans showed very little tumor left in Ryan’s body. We had come so far – only 2 more rounds to go.
This pediatric cancer awareness month, please take the time to think about how you spent your summer, or how your children spent their summers, between 2nd and 3rd grade. Ryan was not running outside, having sleepovers, swimming, or enjoying county fairs. She was confined to a hospital bed or a small apartment, vomiting daily (sometimes hourly), far away from every friend she knew. Her persistent positive attitude got her through, and to be honest, it is the only thing that kept all of us going. There was always that beautiful smile. Thank you so much to all who have already donated. If you have the means, please consider a donation to the Team Ryan Charitable Foundation for Pediatric Cancer Research. We are a recognized 501(c)(3) charity. Every penny matters. Even if you do not have the means, you could really help us very much by sharing our story with the world. Only through stories like Ryan’s will the world begin to see the cruelty of pediatric cancer. Thank you, friends.
Pediatric Cancer Awareness Month Day Seventeen:
The famous people we met along the way:
Through her battle, Ryan became an ambassador for St. Jude Children’s Research Hospital. She was sick and frail, but she never passed up an opportunity to appear at a fundraising event or promotion to benefit the hospital. At times, she would be discharged from the hospital vomiting, then appear to film a St. Jude PSA just hours later. She appeared with Dolly Parton in a music video. She was featured on a Fox NFL commercial with Michael Strahan, Terry Bradshaw, Joe Buck and Troy Aikman. Following her 8 rounds of chemo, Ryan was also featured on the Today Show for their Thanks and Giving Campaign. Ryan was so brave and so very well-spoken, despite the obvious pain she was feeling much of the time. Pictured below are a few of the very special people Ryan met along the way. We were surprised how many of them reached out to us after she passed to express their condolences. She truly touched everyone she met. The pictures below show Ryan with Scott Hamilton, the Fox NFL crew, Katharine McPhee, Ashley Judd, the Target Race care drivers, Amy Grant, Sheryl Crow, Natalie Morales, Marlo Thomas and Taylor Swift. The last picture is of Ryan at a Nationwide Nascar race in Kansas City, where she spoke at the press conference on behalf of a car sponsored for St. Jude. No matter how sick she was, she always had a smile, and she forever championed St. Jude.
This Pediatric Cancer Awareness month, all funds raised by the Team Ryan Charitable Foundation for Pediatric Cancer Research are for the benefit of St. Jude. We owe St. Jude so much for all they did for Ryan, and for affording our family three very special years with our girl. If you have the means, please consider a tax deductible donation of any size. Thank you, friends.
Pediatric Cancer Awareness Month Day Sixteen:
The Story of Merlin the Cat:
Practically from the time she could talk, Ryan asked us for a cat. She dressed up as a cat for Halloween, she loved Hello Kitty, and she watched every cat show available on Animal Planet. For those who know Jeff, you might know that he is allergic to and generally DOES NOT LIKE cats. When Ryan was being discharged from Kansas City and transferred to St. Jude Children’s Research Hospital, we snuck in a quick trip to a local pet store, where cats were up for adoption. Ryan fell in love with a tabby cat named Merlin, and the rest was history. Daddy could not tell her no. We were cat owners. Prince Merlin quickly became the most spoiled cat that ever lived. Grandma Ohio brought him to Memphis for Ryan. Ryan could not have Merlin with her at the Target House, but we found a great Cat Condo for him at the nearby Claridge Pet Resort. Merlin was so spoiled that he was actually given 2 condos, and free range of the entire building at times. It was not unusual for us to walk in and find him sitting on the lap of the receptionist. On days when Ryan felt well, we traveled to visit Merlin. As you can see by the smile on her face in the first pictures, visiting with Merlin made her day. Once we moved into a rental home (the last three pictures), Merlin had a private room at the top in Ryan’s playroom. We spent more than $5000 (a discounted rate, thanks to the Claridge Pet Resort and donated cat food) to have Merlin the cat near us during Ryan’s treatment, and it was worth every penny for the therapy it provided. When Ryan’s condition worsened, Merlin comforted her. When she passed away, he searched for her. Today, he lives with Grandma Ohio. When he hears the voice of Jeff or me, he comes running out of the back bedroom to visit us, and immediately jumps in our laps. This is great for Jeff’s allergies, but he usually doesn’t object. There is something to be said for therapy pets. After 4 rounds of chemo, Ryan’s scans showed the cancer was continuing to shrink, and in some areas, it disappeared. We were encouraged to keep fighting, hoping against hope that this treatment might actually work.
Thank you so, so much to all who have donated to our cause and shared our story. It means the world to us to tell the story of Ryan to the world. If you can afford a tax deductible donation of any size, please consider a donation. Please also give our Facebook page a like – Team Ryan Charitable Foundation for Pediatric Cancer Research.
Pediatric Cancer Awareness Month Day Fifteen:
Ryan’s first two of eight rounds of chemotherapy were the most brutal. We worked so hard to find the precise combination of anti-nausea medications. If she felt even the slightest bit nauseous, Ryan would not eat. Her weight plummeted to approximately 45 pounds (keep in mind she was 8 years old), resulting in the added administration of TPN (Total Parenteral Nutrition) each evening. Ryan was now receiving all of her nutrition via IV. Her strawberry blonde curls fell out, and for 3-5 days each month, Ryan’s counts were so low that she was not permitted to leave our Target House apartment without a mask. This active, happy girl spent most of her days sleeping. One time during these first two rounds, Ryan spiked a fever, resulting in an added hospitalization in isolation for 4 days. This change was so sudden and dramatic. Ryan went from looking like the child in my post from yesterday to looking like the pictures below within a matter of 2 weeks. When Ryan felt up to it, we would venture to the mall or a movie theater, but never without a blue vomit bag. We became very aware of the way people looked at Ryan, and tried to protect her as much as possible. If I could make one suggestion, when encountering a pediatric cancer family, it would be to please reserve your pity. Ryan’s attitude was positive, and for that, she was the picture of strength. Ryan’s first scans were conducted after the second round of chemo. We were overjoyed to learn that all tumors in Ryan’s lungs had shrunk, and there were no other lesions in her liver or on her adrenal gland. The treatment was working! The cancer was actually disappearing! This encouraged our continued fight.
During this pediatric cancer awareness month, if you can afford to do so, please consider a tax deductible donation of any size to the Team Ryan Charitable Foundation for Pediatric Cancer Research. We would also really appreciate you sharing our story and our cause. What happened to Ryan could just as easily have happened to a child who you love. Pediatric cancer is not rare – it is the leading cause of death by disease in children. Thank you, friends.
Pediatric Cancer Awareness Month Day Fourteen:
Following Ryan’s first of 8 rounds of chemo, she was weak and frail. She literally could not eat, and I mean she could not and would not eat ANYTHING! Many offered suggestions of sugar free and alkaline diets for cancer patients. These were nice suggestions, but at this point, we were eager to get her to take a bite of any piece of food containing a calorie. The medicine in the picture below demonstrates what Ryan took each day. She could not swallow pills initially, so we ground everything and blended it with cherry syrup. Jeff and I literally spent at least an hour each day preparing medicine, and this did not include the intravenous fluids we connected her to each night to prevent dehydration and provide electrolytes. Our cell phone alarms were programmed around the clock to remind us to give medication. Ryan knew that her hair would eventually fall out, so she asked if she could have a short haircut. Of course, she looked adorable, and would continue to look adorable even without hair. We took the our first opportunity of freedom to go shopping at Old Navy and buy some fun new clothes for Ryan that actually fit. Ryan and I literally came to Memphis with one bag, and Ryan’s rapid weight loss meant nothing fit her. It was the best shopping trip I have ever had with my girl. Instead of watching her sit in a hospital bed, I was watching her grab clothes from the rack and throw them in the cart. There was NO ONE who could shop like Ryan:) Following approximately 6 weeks straight in the hospital, our family settled in at the Target House, which is St. Jude housing consisting of two buildings of 2-bedroom apartments a few miles away from St. Jude Children’s Research Hospital. The fountain picture below is a picture of the front of Target House I. Apartment 408 would be our home for the next 6 months, and we would travel to and from the hospital almost daily for check-ups. In between, however, we would visit the zoo, watch movies, visit Ryan’s kitty, Merlin (this story will follow on a later post), and attend fun activities in the Target house. Our family benefited from a $100 Kroger gift card weekly, provided by St. Jude, to help us pay for groceries. We also received love and support from various organizations (including Target), who would host dinners, bingo, concerts, karaoke, face-painting and all sorts of fun for the children. The Target house itself contained a music room sponsored by Amy Grant, an art room and a gym sponsored by Scott Hamilton, a library sponsored by Tiger Woods, and a family/video room sponsored by Brad Paisley. The playground, outside, was accessible to children in wheelchairs, and the outdoor pavilion, with big screen televisions, had 4 barbeque grills, donated by the PGA wives’ foundation. Most importantly, we were surrounded by a community of families who were in the exact same situation as us. We understood when people were crying. We understood when people were angry. We developed a sense of when to reach out a hand and when to allow space. All of us were fighting.
Our family was fortunate enough to have a large support system behind us as we battled for Ryan. We were far away from home, in Memphis, but we never felt alone. Other families at Target House were very alone – some with just one parent, some from foreign countries, and some who did not even speak English. I cannot even imagine what this battle must have felt like for them. In addition to our goal of funding pediatric cancer research, the Team Ryan Charitable Foundation for Pediatric Cancer Research has a secondary goal of assisting families who are battling pediatric cancer, as others assisted us. Thank you, friends, to those who have donated to our cause. If you have the means, please consider a tax deductible donation.
Pediatric Cancer Awareness Month Day Thirteen:
Ryan and I arrived at St. Jude Children’s Research Hospital on February 26, 2010, after a long and uncomfortable 9 hour ambulance ride. We were greeted not only by intake staff, but also by Ryan’s new doctor. There was no panic in Dr. McGregor’s voice. She smiled, she talked directly to Ryan, and I could feel myself finally exhaling a little after 22 days of sheer panic and worry. Notably absent from our first day at St. Jude was a lady pushing a rolling cart and collecting insurance information. We had become so accustomed to being asked for our insurance card. We were even asked for it as doctors resuscitated Ryan in the ER. We didn’t even have an insurance card, because we were on a Central Hockey League insurance plan out of Canada. I grew accustomed to explaining this, and appreciated not having to do so on our first day at St. Jude. The following day, when I did have to go down to patient intake, it was a surprisingly easy process. I provided the information I had, then started to explain that I did not have an insurance card, and we would not have insurance pretty soon. The sweet lady just stopped me. “Honey,” she said, “you don’t even worry. You are a St. Jude family now, and you will always be a St. Jude family. We will take care of you.” After more than 20 straight days in the hospital, with no shower for 3 days, wearing a tattered ponytail and the same clothes I left Kansas City in 36 hours previously, this comment put me over the top. The tears started flowing. We were finally safe, and Ryan would be treated no matter what. In the coming days, tests were run, a baseline was established and a protocol was discussed. Ryan would receive 8 rounds of one of the toughest chemo protocols available. Each round would consist of cisplatin (which literally contains platinum) for 3 days, followed by doxorubicin for one day, and etoposide for one day. These would be administered in the hospital through Ryan’s double Hickman line, which was inserted in her chest. Ryan also took an oral chemo drug specific to ACC called mitotane, 4 times per day, and a steroid, prednisone, 3 times per day to supplement her hormone levels. She received injections in her abdomen morning and night to prevent blood clots, in addition to the numerous anti-nausea medications we used to try to prevent her nearly consistent vomiting. Just keeping up with medicine was daunting. After the 5 days of intravenous chemo in the hospital, we would be released to long-term housing at the Target House (St. Jude housing) for approximately 16 days, then do it all over again for the next round. If Ryan spiked a fever at any point when her immunity levels were low, she would be admitted to the hospital, in an isolation unit. If her hemoglobin or platelet levels became low, she would need transfusions. It sounded like so much, but what were we to do? If we did nothing, we would certainly lose her in a relatively short period of time. If we agreed to this protocol, Ryan would surely suffer, but we would prolong Ryan’s life. In our over-tired and emotional minds, time meant the possibility for more research, and possibly, some day, a cure. The pictures below were taken during Ryan’s first round of in-patent chemo at St. Jude. I recall watching as nurses in gloves and aprons carried IV bags of medication into our room to connect to my 8 year old daughter’s line. Treatment had begun, and all we could do was hope for the best.
During this pediatric cancer awareness month, please consider that the treatment protocol used to treat Ryan was the best option available to us, but it had already been proven largely unsuccessful in children with Stage IV ACC. Essentially, we were buying time. While we would do it all over again for the 3 additional and amazing years we had with Ryan, it simply does not seem right that new options are not available for children like Ryan. If you have the means, please consider a tax deductible donation of any size. Our goal is to fund much needed research for cancers like Ryan’s. We would also really appreciate a “like” of our facebook page – Team Ryan Charitable Foundation for Pediatric Cancer Research. Our sweet daughter was one of approximately 20 children in the United States diagnosed with pediatric ACC in 2010. Please share our story. Thank you for your love, support and donations.
Pediatric Cancer Awareness Month Day Twelve:
On February 15, 2010, we woke up well before the sun and started preparing Ryan for surgery. She wanted none of it, and lowered her sleeping mask over her eyes. This was a tactic she used often to shut out the world. We hugged and kissed her before she was wheeled back for surgery, then hunkered down in a small room in the Ronald McDonald House for what was to be at least a 5 hour surgery. We were given updates along the way: anesthesia went fine, surgery was progressing, tumor was removed, the incision was closed, the epidural was inserted, and finally, she was in recovery. When the surgeon came to visit us, he told us surgery went as well as it possibly could have. The tumor was completely removed, along with a spot from Ryan’s liver. All would be biopsied, but for the moment, we could celebrate a successful surgery outcome. Ryan had a large mercedes scar on her stomach, and for a few days, she had quite a bit of pain. After a few days, however, she requested breakfast, and we knew she was on the mend. In the coming days, our happiness over a successful surgery would subside as we were informed of the results of Ryan’s tumor biopsy. She had adrenal cortical carcinoma – the very worst of the adrenal gland pediatric cancers. There was a treatment protocol, and there were a few success cases where the disease was caught in its early stages, but Ryan was stage IV. That little “spot” on her liver was also cancerous, and we would learn in the coming weeks that there were also tumors in Ryan’s lungs. As we tried to come to grips with this reality, we began thinking of treatment options. Hockey season was coming to an end. During the off-season, our family had always purchased short-term health insurance to get us through the summer, to the next hockey season. Obtaining such insurance when our child had a rare cancer would be nearly impossible, and financially prohibitive. I owned my own business, with no option for insurance. As an added wrinkle, Children’s Mercy hospital had no other patients with this type of cancer, which afflicts approximately 20 children in the United States each year. We researched the treatment options, and learned that St. Jude Children’s Research Hospital developed the current protocol for treatment, they had a pediatric tumor registry, and other children with this type of cancer were being treated there. Although there were certainly no promises, we felt like it was the best place we could be. Even better for our family was the fact that St. Jude is truly the only pediatric cancer hospital where no family is turned away, regardless of their ability to pay. They did not ask if we had insurance. They did not ask if we could afford treatment. They did not even ask us to pay to bring Ryan to Memphis. They sent an ambulance through the dead of the night to Kansas City to pick up Ryan and me, and off we traveled on a 9 hour drive to Memphis.
Thank you to all who have donated to our cause during this pediatric cancer awareness month. I hope that in some way our story touches you, and you come to understand that our child could be your child. If you have the means, please consider a donation. Please also feel free to share our story. Awareness is critical. You can also like us on facebook at Team Ryan Charitable Foundation for Pediatric Cancer Research. Thank you, my friends!
Pediatric Cancer Awareness Month Day Eleven:
When our family woke up on February 5, 2010, our lives were forever changed. Ryan had suffered repeated seizures. She could barely talk. She could not find words. Our previously vibrant child, who loved art, could not even color within the lines of a coloring sheet. Our avid reader could not identify letters. She suffered pretty severe brain damage from the seizures, and it scared us beyond belief. To make matters worse, doctors still had no idea what was causing Ryan’s problems. Brain tests revealed continued mild seizures. High blood pressure persisted, and tests of Ryan’s hormone levels returned extremely irregular. Doctors tried to test Ryan’s vision during this time, but even the most basic vision tests were useless, because Ryan could not come up with the words for “car” or “dog” or “phone”, even if she could see them. She just became more and more frustrated, and as a mother, I lashed out at everyone for failing to determine what was causing this condition. After 8 long days in the hospital, doctors finally conducted a CT scan of Ryan’s chest and abdomen. Jeff was present for the scan, but then left to play a home hockey game that evening for the Missouri Mavericks. I was sitting in the room with Ryan, with the winter Olympics on television, when a team of doctors entered our room. They asked if I wanted to speak with them alone, and they asked if I wanted a social worker present. I knew I was about to receive terrible news. I told them I was fine, and asked them to please tell us! A young fellow was apparently given the task of doing this, and she had tears in her eyes as she relayed the news that Ryan had a 4 cm x 6 cm tumor on her adrenal gland. It was likely cancer, she said, but they did not know what kind. I called Jeff as the National Anthem played in the background at his hockey game. I hugged Ryan and told her it would be okay. I really didn’t know if she would be okay, but what else so you say to an 8 year old who is laying in a hospital bed? I then did the worst thing ever, and googled adrenal gland cancer. There were several different kinds, and we stood a fighting chance so long as she didn’t have adrenal cortical carcinoma. It was a 1 in 3 million chance that she would have this type of adrenal cancer, so I tried to reassure myself that this would be a short period in our lives, but our girl would ultimately be okay. Jeff somehow played that hockey game, and joined us immediately after. Through everything, he remained loyal to his team and did his very best to play every game. The tumor would need to be removed. There was talk of laparoscopic surgery through Ryan’s belly button, then talk of a larger surgery, which was to occur on February 15, 2010. On Valentine’s night, we were spending time together as a family when the surgeon came to speak with us. He drew a picture of Ryan’s tumor, and discussed the surgery and possible complications. He called Jeff and me outside the room to tell us, “I never say 100%, but I am 100% sure this is cancer, and it may be too late.” Ryan’s tumor was on her adrenal gland, and it was growing up her vena cava, toward her heart. This was causing the high blood pressure, which was causing her seizures. We were so very scared. Jeff and I literally clutched each other on the tiny parent’s bed in the hospital room the entire night, and neither of us slept very much at all. We hoped she would make it through the surgery the next day, and we hoped beyond hope that the surgeon’s 100% statistical analysis was even just a little bit off. Our message to Ryan never changed, however. We told her every night, “You are Strong, Healthy and Loved.”
I know that these long posts this month might be burdensome for some of you. I promise they will stop next month, but I do not apologize for telling Ryan’s story. She was amazing, and we lost her because there is no cure for her type of pediatric cancer. If you have the means, friends, please consider a donation. Ryan could be your child in the blink of an eye. Hug your children, love them, and do not take them for granted. Please share our story. We also encourage you to like our Facebook page, Team Ryan Charitable Foundation for Pediatric Cancer Research.
Pediatric Cancer Awareness Month Day Ten:
On February 3, 2010, Ryan had just turned 8 years old, and she was in the midst of her 2nd grade year at William Bryant Elementary, in Blue Springs, Missouri. She went to school, came home, finished homework, then attended basketball practice, where she completed wind sprints for the last 10 minutes of practice, winning every one of them. Jeff and Ryan stopped at Walmart, then came home. Ryan was complaining of a headache, so we gave her some children’s Tylenol, and she went to bed. The next morning, on February 4, 2010, she woke up feeling better, so she went to school like any other day. Around 10:00, the school called because Ryan was in the nurse’s office with a headache. I picked her up, made a doctor’s appointment for her for 11:00, and took her home to rest. When I went to Ryan’s room to get her for her appointment, I found my perfectly healthy 8 year old on her bed, completely unresponsive, her teeth clinched, and her eyes rolled back in her head. I could tell she was breathing, but that was all I could determine before racing to the home telephone to dial 911. I didn’t even know what to say when they answered. I now recall watching movies where people scream “GET HERE” rather than answering the questions the operator asked. In this instance, I was that person from the movies. I didn’t have a clue what to say other than, “something is wrong with my daughter, get here now!” The ambulance was there within minutes. They inserted an IV cut off her little princess t-shirt and went to work. Next thing we knew, we were in an ambulance racing down I-70 toward Kansas City Children’s Mercy Hospital. It was all so surreal, like something happening to someone else, like I was witnessing myself experience something horrific, and there was nothing I could do to stop it. The ER doctors were able to determine Ryan had critically high blood pressure, and they administered medication to lower it. Ryan was still not responding, and doctors could not determine what was causing her symptoms, only that she was suffering repeated seizures. Tests for meningitis came back negative, so they wheeled her back for an emergency CT scan. I kissed her as she went back. She couldn’t respond to me, but a tear fell from her eye. As I sat in the waiting room, all I could think was, “what will we do if they tell us she has a brain tumor?” Within the hour we learned the CT scan was clear. I didn’t know whether to be relieved or scared, because we still had no idea what was causing this high blood pressure. Doctors stabilized Ryan on a ventilator in the pediatric ICU. That night, they would resuscitate her 3 times. Chaplains and social workers tried to stand by my side, and I just screamed for them to leave. I did not need comforting – I needed my daughter to live. When the sun came up on February 5, 2010, our family began its introduction to what would become our “new normal”. Our daughter would never be the same again, but we were so grateful that she made it through the night. She was alive.
I hope that this post helps to demonstrate how life can change so quickly. My child could be your child. She was the picture of health, and then she nearly died. During this pediatric cancer awareness month, please consider a donation. To this day I think about how scared Ryan must have been as she suffered seizures and could not communicate with us. We want something beautiful and meaningful to result from her bravery, and her short life. Please also take a moment to like our facebook page – Team Ryan Charitable Foundation for Pediatric Cancer Research. Thank you, friends!
Pediatric Cancer Awareness Month Day Nine:
When Ryan was 7, our family moved once again, to Blue Springs, Missouri (just outside of Kansas City), where Jeff became the player/assistant coach of the Missouri Mavericks. It was a fresh start for our family, but yet another move. Ryan never complained about moving. She always missed her friends, but looked forward to meeting new friends, knowing she would remain friends with those she moved away from as well. The picture below shows our move, with Ryan (headphones on) sitting next to a cooler containing our goldfish (with aerator plugged into the cigarette lighter). One dog was in the back of our SUV, and the other was in the moving van with Jeff. The house plants sat on top of the goldfish cooler, and two guinea pigs were in the front passenger seat. Never a dull moment! Ryan was lucky enough to be placed in the second grade classroom of Judy Payne Linke. Mrs. Linke was an amazing teacher, and above that, a compassionate friend. Ryan thrived in Mrs. Linke’s classroom. Her figure skating coach was Carrie Lyons-Greene, and her soccer coach was Jeff Seever. Both will be our forever friends. Carrie’s daughter, Evan, was a dear friend to Ryan. The soccer team Ryan formerly played on is now called the “RC Express”, in her honor, with wings on their jerseys.
These pictures were taken within 6 months of us almost losing Ryan. Does she look sick to you? Our child could be your child. A tumor was growing inside her body, and we had no idea. She was a normal kid. Pediatric cancer is not rare. It could happen to you, in the blink of an eye. If you have the means, please consider a donation at www.teamryanfoundation.org. Please also like our facebook page, Team Ryan Charitable Foundation for Pediatric Cancer Research. Thank you to all who have donated. If you have the means, please consider a donation on our website. Most of all, we would love for you to share our story and spread awareness. Thank you, friends!
Pediatric Cancer Awareness Month Day Eight:
Just before Ryan started kindergarten, our family moved to Tulsa, Oklahoma, where Jeff served as the player/assistant coach for the Tulsa Oilers. One perk of moving to Tulsa was living in the same town as my Dad for the first time in more than 10 years. Ryan really enjoyed getting to spend some time with Grandpa Al and Grandma Cheryl. She also enjoyed all of the new friends she met in Tulsa, including the “Abby’s”, pictured in the first Halloween picture, below, Kailey and Kristen, pictured with Ryan at the zoo, and of course, all of the “Hornets” soccer team, pictured in yellow. Ryan’s favorite babysitter was Hannah, an Oral Roberts student who babysat Ryan nearly every late hockey game. Ryan came into her element, excelling at soccer and figure skating. During the summer between kindergarten and first grade, we took a fabulous trip to Montana, where we stayed at a beautiful home owned by my Uncle Glen and Aunt Jeanne, right on the Yellowstone River. Ryan so enjoyed fishing, riding horses, visiting the dinosaur museum, and of course, visiting Yellowstone National Park. The summer following first grade, we made a trip to Memphis, Tennessee, to attend the wedding of Lauren and Stephen Margeson. On our way into town, we passed a series of pink-hued buildings with the logo of a child praying on them. It was St. Jude Children’s Research Hospital. Ryan asked what it was. Knowing only what we had seen on telethons, we told her it was a special place where they made sick kids feel better. Oh how important those pink-hued buildings would become just a year later.
My child could be your child. In the summer of 2009, Ryan was a normal, healthy, almost 2nd grader. She was not sick, and there was no indication that she would become sick. Thank you so much to all who have donated to our cause. If you have the means, please consider a donation of any size. Most importantly, please spread the word and share our story. Please also like our Facebook page – Team Ryan Charitable Foundation for Pediatric Cancer Research. Thanks friends!
Pediatric Cancer Awareness Month Day Seven:
Ryan turned 5 on January 7, 2007. She graduated from pre-school that Spring. The most exciting part was remaining in Youngstown, Ohio, for that hockey season, marking the first time in five years that our family did not move between hockey seasons. We actually purchased a home! We jinxed ourselves, of course, as we would be on the move just months later. Ryan took figure skating lessons at the new ice rink, played soccer, and took swimming and ballet lessons at the Boardman YMCA. She loved to dress up, and certainly developed a creative fashion sense, as demonstrated by the fancy costume in the picture below. Ryan’s favorite babysitter was Lauren Fithian. Lauren honored Ryan by riding the Pelatonia bike race years later, and brought cookies, frosting and sprinkles to Ryan in her final days (2012), so that Ryan could decorate cookies at Christmas time.
5 year old Ryan was as healthy as could be. She never even had an ear infection in her life. There was no reason to believe that just 3 years later, our lives would change forever. Our child could be your child. If you have the means, please support pediatric fundraising through a tax deductible donation. Every bit counts. Thank you so much to all who have already donated! Please take a minute also to like our Facebook page – Team Ryan Charitable Foundation for Pediatric Cancer Research. Most importantly, please share our story, and spread the word.
Pediatric Cancer Awareness Month Day Six:
When Ryan was 4, our family finally settled back in the United States (in OHIO no less!!) where Jeff became the player and assistant coach for the upstart Youngstown Steelhounds of the Central Hockey League. We were so very excited to have American things again, and Ryan loved attending preschool and meeting new friends. Jeff traveled a lot for hockey, so Ryan, Grandma Ohio and I took the opportunity to make a quick trip to Walt Disney World, where Ryan finally was able to meet some REAL princesses! She had her hair and makeup done at the Bippity Boppity Boutique, and her face painted at Disney’s Animal Kingdom. For the first time in a very long time, we did not have an ocean separating us from our extended families. It was so nice to finally spend time with Grandma Canada, who was just a 5 hour car ride away in Hamilton, Ontario, and with Grandma Ohio, who was just a 3 hour car ride away in Columbus, Ohio. Ryan’s favorite toys were barbies, and she loved watching Nick Jr.
My child could be your child. At age 4, Ryan was the picture of health. She rarely had a sniffle. How were we to know that cancer would invade our lives just four years later? If you have the means, please consider a tax deductible donation to www.teamryanfoundation.org. All proceeds raised during pediatric cancer awareness month are for the benefit of St. Jude Children’s Research Hospital. St. Jude researches rare cancers like Ryan’s, and freely shares all findings nationwide. Please also give us a like on our facebook page – Team Ryan Charitable Foundation for Pediatric Cancer Research. Thanks friends!
Pediatric Cancer Awareness Month Day Five:
The summer after living in Sheffield, England, Ryan was 3, and we purchased a cottage on the shores of Lake Erie on Put-in-Bay Island. For those outside of Ohio, this is a little 4 mile by 2 mile island in Lake Erie, which requires about a 20 minute ferry ride. The picture below is one of Jeff and Ryan on the Miller ferry. Our little neighborhood was tucked away from the hustle and bustle of the downtown craziness, and the friends we met on Airline Drive are counted amongst our dearest friends still today. Ron and Audrey Borchert were our neighbors across the street. They would invite Ryan over to talk with their pet parrot. Ryan loved how the bird would call the dog and whistle:) The Zimmerman family (or “Zipperman’s”, as Ryan called them) owned a paint company and made signs. They became concerned that cars were driving too fast down the road where Ryan was riding her bike, so they put up a sign advising “Ryan is playing”, with a picture of a little girl on a bike. When Ryan became sick, they made her the sign pictured below, which read, “I am Strong, Healthy and Loved”. Our summer at Put-in-Bay was one of our favorites. Ryan ran outside, rode her bike, and chased all kinds of critters around (including snakes!). I look back on this time always with a huge smile.
My child could be your child. I will not stop reminding you that pediatric cancer is NOT rare. I was not a cancer parent either, the day before my perfectly healthy child was diagnosed. The answer is funding so that we can find a cure. Several pediatric cancers have a 0% survival rate. This MUST change. If you have the means, a small donation is appreciated. Simply click “donate”. All funds raised this month are for the benefit of St. Jude Children’s Research Hospital. Please also take the time to like our Facebook page – Team Ryan Charitable Foundation for Pediatric Cancer Research. Thank you for bearing with me on this journey, friends! It is so nice to tell the story of Ryan. I am sad, but remembering makes me smile.
Pediatric Cancer Awareness Month Day Four:
When Ryan was 3, we lived in Sheffield, England, where Jeff played hockey for the Sheffield Steelers. Ryan attended preschool at the Woodhouse nursery, where we met our dear friend, Lyndsey, and eventually her sweet mother, Anne. Ryan started using words like “trousers”, and saying things like “tidy up!” Queue Mary Poppins. The little British accent was adorable. We had fun with our dear friends the Bobyck’s, the Anderson’s, the Cousineau’s, and Helen White and her partner Nic. Ryan was a perfect little princess, and loved dressing as one each day. One of our most memorable moments was when Aunt Emily came for a visit. Ryan loved to watch me wash my face and put on my night cream. One night while Emily was visiting from Ohio, we were enjoying a glass of wine when we heard some rustling on the baby monitor. We went upstairs to find Ryan’s face covered in Desitin diaper cream! Apparently, that was her face cream:)
My child could be your child. Pediatric cancer is not rare. Please donate so that others do not miss their children the way we miss our Ryan. If you have the means, a tax deductible donation would be greatly appreciated.
Pediatric Cancer Awareness Month Day Three:
When Ryan was 2, we lived in Hannover, Germany, while Jeff Christian played for the Hannover Scorpions. Ryan loved playing kitchen, reading books, and watching Blues Clues. She also enjoyed going to a play group 3 days a week, where she learned to begin speaking in German. The lady who ran the group was named Margaret, but to Ryan, she was forever known as “Marker”. Ryan’s spunky little character became evident, and we enjoyed getting to know the personality of this little person more and more each day.
Ryan could just as easily have been your child. 1 in 330 children is diagnosed with cancer before the age of 19. Pediatric cancer is NOT rare. It is, however, very underfunded, receiving just 4% of federal dollars dedicated to cancer research. 1 in every 5 children diagnosed with cancer dies. If you have the means, please click “donate”. The funds raised by Team Ryan are for the benefit of pediatric cancer research. Go Gold!
Pediatric Cancer Awareness Month Day Two:
When Ryan was one year old, our family moved to Dusseldorf, Germany, so that Jeff could play hockey for the DEG Metrostars. I will forever remember the image of Ryan crawling around in her little hockey jersey. She began talking very early – her first word was “keys”. We happily gave her our keys to occupy her, then inevitably ended up searching for them for minutes/hours/days every time we needed to go somewhere. We would ultimately find them tucked inside her toy box, one of her little purses, or her playpen. She was very good at hiding the keys! We never learned to stop giving them to her, though. She clearly ran the show, and how could we say no to those pretty blue eyes? At one year old, she finally started to walk, and then we were ALL in trouble.
My child could be your child. Pediatric cancer knows no boundaries. If you have the means, please donate to our foundation. Funds raised this month are for the benefit of St. Jude Children’s Research Hospital. They are a leading pediatric cancer research institution, and they share their findings freely with the world. There are no secrets in pediatric cancer research. There is, however, a lack of funding.
Welcome to our new Team Ryan Foundation Blog!!!
For those who followed us throughout our journey on Caringbridge, we envision this as a continuation of that blog, with a primary focus on pediatric cancer research fundraising and awareness. We will also do our best to keep you informed about the current day to day activities of our family, as we continue to recover from the loss of our beautiful Ryan.
It has been 20 months since Ryan passed away, but most days, it feels like just yesterday. We have attempted to fill her absence with a large goal, in her name, of fundraising for pediatric cancer research. We are the Team Ryan Foundation, because Ryan Had an entire team behind her throughout her three year battle, and because it will literally take a team to defeat the various pediatric cancers that are so critically underfunded.
Did you know that all types of childhood cancers combined receive only 4% of U.S. federal funding for cancer research? Combined! While adult cancers are divided into diagnoses of breast, pancreatic, prostate, colon, etc., for funding purposes, all pediatric cancers are grouped together for funding purposes as “pediatric cancer”. Clearly, there is a large difference between pediatric Leukemia, a pediatric brain tumor, and a pediatric bone tumor. About 60% of all funding for drug development in adult cancers comes from pharmaceutical companies. For children, almost NO funding comes from pharmaceutical companies, because childhood cancer drugs are not profitable. Cancer is the leading cause of death by disease in children and adolescents in the United States. The average age of children diagnosed with cancer is 6. One in five children who are diagnosed with cancer will not survive. Team Ryan hopes to do our small part to fill this fundraising gap.
September is pediatric cancer awareness month. In Ryan’s memory, throughout this month, we will tell her story. We do so not to guilt anyone into a donation, but to share the true story of a family who experienced pediatric cancer. Look at your healthy children, and please know that our story could be yours. Ryan’s story could be the story of your child. Until research is funded, things will not change. So our story begins:
Krefeld, Germany – January 7, 2002:
Ryan was born in Krefeld, Germany, one week early. Jeff was playing hockey for the Krefeld Penguins of the DEL. There were four little girls born to hockey players that hockey season, and Ryan was the third. We were first time parents in a foreign country, finding our way. Ryan was strong-willed and independent from the start. We did not realize it at the time, but that strong will would serve her well in her future cancer battle.